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Congenital Hyperinsulinism International

Learn about this cause: Is it Legit? Do I like the mission? What is the CEO's salary?

EIN: 203068945 ✦ Glen ridge, NJ ✦ Designated as a 501(c)(3)

Overview

What is Congenital Hyperinsulinism International?

Congenital Hyperinsulinism International (CHI) is a dedicated nonprofit organization, based in Glen Ridge, New Jersey, with a mission to enhance the lives of individuals affected by Congenital Hyperinsulinism (HI), a potentially life-threatening genetic disorder. CHI engages in extensive research and collaboration with medical professionals and the biopharmaceutical industry to accelerate the development of patient-centered treatments and ultimately, a cure for HI. They manage funding programs, such as the Million Dollar Bike Ride grant and the HIHA pilot grant, to support innovative studies and improve the quality of life for those affected by HI. CHI also oversees the HI Global Registry (HIGR), an online platform that allows patients to share their experiences and contribute to a better understanding of the disorder, leading to improved treatments and diagnoses. In 2022, CHI received a grant to establish the Collaborative Research Network, fostering international cooperation among researchers, clinicians, and patient advocates to advance research, develop new treatments, and improve access to care.


Official website here: www.congenitalhi.org

Is Congenital Hyperinsulinism International legitimate?

Congenital Hyperinsulinism International is a legitimate nonprofit organization registered as a 501(c)(3) entity. Congenital Hyperinsulinism International submitted a form 990, which is a tax form used by tax-exempt organizations in the U.S., indicating its operational transparency and adherence to regulatory requirements. Donations to this organization are tax deductible.

Here are some key statistics you may want to consider:

Executive Compensation: $93,866
Professional Fundraising Fees: $0
Other Salaries and Wages: $264,957

For more financial information, click here


Official website here: www.congenitalhi.org

What is the mission statement of Congenital Hyperinsulinism International?

Congenital Hyperinsulinism International, often referred to as CHI, is committed to enhancing the lives of individuals impacted by congenital hyperinsulinism, a genetically inherited disorder. This condition can lead to severe hypoglycemia, potentially causing seizures, brain damage, or even death if left untreated. CHI's primary mission is to provide education and support to the families of diagnosed individuals. By raising awareness of the disorder, CHI aims to facilitate timely diagnoses, thereby reducing the risk of death and brain damage. Furthermore, CHI advocates for improved care and better neurological outcomes. In addition to education and awareness, CHI supports research and development to deepen understanding of the condition and seek better treatments and management methods. The ultimate goal is to discover a cure for congenital hyperinsulinism.


Official website here: www.congenitalhi.org

Who is the CEO of Congenital Hyperinsulinism International?

Sheila Bose is the President of Congenital Hyperinsulinism International.


Official website here: www.congenitalhi.org

What is the revenue of Congenital Hyperinsulinism International?

Congenital Hyperinsulinism International's revenue in 2022 was $1,262,625.


Official website here: www.congenitalhi.org

Who are the executives of Congenital Hyperinsulinism International and what are their salaries?

The average compensation at Congenital Hyperinsulinism International during 2022 was $71,765. There are 5 employees and 130 volunteers at Congenital Hyperinsulinism International.

Here are 7 key members and their salaries:

    Julie Raskin (Executive Dir.) [Trustee/Director]
  • Compensation: $93,866
  • Related: $0
  • Other: $0

    • Sheila Bose (President) [Trustee/Director]
  • Compensation: $0
  • Related: $0
  • Other: $0

    • Turaya Bryant Kamau (Secretary) [Trustee/Director]
  • Compensation: $0
  • Related: $0
  • Other: $0

    • Erin Greaves (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0

    • Mason Smith (Treasurer) [Trustee/Director]
  • Compensation: $0
  • Related: $0
  • Other: $0

    • Pam Williams (Director)
  • Compensation: $0
  • Related: $0
  • Other: $0

    • Julie Sheldon (Vice President) [Trustee/Director]
  • Compensation: $0
  • Related: $0
  • Other: $0


  • Official website here: www.congenitalhi.org

    Where can I find the form 990 for Congenital Hyperinsulinism International?

    The Congenital Hyperinsulinism International’s most recent form 990 was submitted in 2022 and can be accessed here


    Official website here: www.congenitalhi.org

    Learn more at the official website: www.congenitalhi.org

    Mission Statement of Congenital Hyperinsulinism International

    Congenital Hyperinsulinism International, abbreviated as CHI, is committed to enhancing the lives of individuals afflicted by congenital hyperinsulinism, a life-threatening genetic disorder. This disorder leads to severe hypoglycemia, a condition marked by low blood sugar levels, which can result in seizures, brain damage, or even death if left untreated. The organization's mission is threefold.

    Firstly, CHI aims to provide education and information to families of those diagnosed with congenital hyperinsulinism. This includes babies, children, and adults living with the condition. By disseminating knowledge, CHI endeavors to foster timely diagnoses, thereby reducing instances of death and brain damage. Early diagnosis and appropriate management can significantly improve the neurological outcomes for individuals affected by this condition.

    Secondly, CHI is dedicated to promoting awareness of congenital hyperinsulinism. By increasing public knowledge, the organization hopes to expedite diagnoses, ultimately leading to better care and improved treatment options. A well-informed society is better equipped to support individuals and families living with the condition, fostering a more compassionate and understanding environment.

    Lastly, CHI supports research and development efforts aimed at deepening our understanding of congenital hyperinsulinism. This research is integral to the development of better treatments and management strategies for the condition. Ultimately, the organization's ultimate goal is to work towards a cure for congenital hyperinsulinism, improving the quality of life for those affected by this life-threatening disorder.

    Impact

    This information is meant to be a general summary of Congenital Hyperinsulinism International. Please take the time to review official sources before making any decisions based upon the content provided here.




    Thursday, August 15, 2024

    Congenital Hyperinsulinism International has a significant impact on the lives of individuals affected by congenital hyperinsulinism (HI). The organization plays a crucial role in supporting research and development to improve understanding, treatment, and management of HI, with the ultimate goal of finding a cure for this life-threatening genetic disorder. Additionally, Congenital Hyperinsulinism International facilitates the sharing of the patient perspective with researchers and industry stakeholders to drive the development of patient-centered treatments at an accelerated pace.

    Through initiatives such as the HI Global Registry (HIGR) research project, which allows the HI patient community to share their experiences and data to advance better treatments and potential cures, Congenital Hyperinsulinism International is actively contributing to the progress in the field. The organization's involvement in programs like the Million Dollar Bike Ride grant and the Collaborative Research Network further demonstrates its commitment to driving impactful research and initiatives that benefit individuals living with HI.

    Furthermore, Congenital Hyperinsulinism International's efforts in establishing CHI Centers of Excellence Designation and publishing peer-reviewed publications that include the patient voice in medical literature highlight its dedication to advocating for improved standards of care, increased access to treatment, and collaborative approaches to addressing the unmet needs of those affected by HI. In summary, Congenital Hyperinsulinism International's impact is evident in its multifaceted approach to supporting individuals with congenital hyperinsulinism and driving positive change through research, advocacy, and community engagement.





    Financials

    This financial information is from Propublica.

    Revenue
    Expenses
    Efficiency

    Other financial information:

    This information is from the most recently submitted tax form from this organization, which was in 2022.

  • Investment Income: $0
  • Program Service Revenue: $812,623
  • Gross Receipts: $1,316,229

    • Assets and Liabilities:
  • Total Assets: $1,644,315
  • Total Liabilities: $46,626
  • Net Assets: $1,597,689
  • Programs

    Programs are reported by nonprofits in their tax forms and are normally their tax-exempt activities.

    CONFERENCES

    Revenue

    $143,487

    RESEARCH

    Revenue

    $669,136

    Organization Details

    Founding Year

    2006

    Principal Officer

    Sheila Bose

    Main Address

    PO BOX 135, GLEN RIDGE, NJ, 07028

    NTEE Category

    Code: G12 - Disease

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